Re: Fw: ANC ! ! ! Note to Bobby

[Guest guest]

Bobby- Here is your daily reminder- DRINK MORE WATER(

and I won't charge ya).

Eva- hmmmm would I be an alumni to the club. I'm not

interested in being an active memeber- smile. Hang in

there , Girl and get thee to a doc who knows what the

heck they are talking about.

Chi

--- Eva <evaob365@...> wrote:

> Hey Bobby , we could start a new club but I didn't

> know I wanted to belong to this one. LOL I am glad

> I do now but maybe we could some how start a wave of

> good blood results and everyone could jump on and

> ride the wave to good health. That is my wish for

> every one. You are in my prayers. Take care ; Eva

>

>

> From: ROBERTA DOYLE

> Sent: Wednesday, June 18, 2008 7:32 PM

>

> Subject: Re: [ ] Fw: ANC ! ! !

>

>

> Hi Everyone, Speaking of ANC - well, I've had

> another interesting day, starting with labs, and my

> anc is 0.8.

> I have been feeling real crappy for several days,

> thought it was starting a new eating program,

> thought it could be high potassium, as I am taking

> one every day now for a week, thought I was coming

> down with something. So I called my trial nurse, and

> given the way I felt, and the two dizzy spells I had

> yesterday, she said to go to emergency. This is a

> new drug and they worry about the effect on the

> heart, and my pulse has been from 98 to 117.

> So, off I went, they took me right in, did an EKG,

> labs, chest Xray and a Cat Scan.....because they do

> this when someone complains of being dizzy.

> I did explain I think I was dizzy because I had

> forgotten my mid morning snack, and was on a new

> eating program, that snack is necessary, and I had

> waited to long for lunch. but they said dizzy can

> mean a brain problem, so the end result was, are you

> ready for this?

> I am dehydrated - stay overnight and be hydrated, or

> go home and drink lots of water.

> SO I figure that cost about $5,000.00, to be told to

> drink more water.

> Also, because the ANC is low, I cannot be infused so

> do not have to go to Ann Arbor tomorrow. Study nurse

> also said NO to the Angioplasty I am scheduled for

> this coming Monday. Also I have to follow up with my

> doctor tomorrow.

> This is my first experience with low ANC, but also

> my HGB is only 9.8, wbc is 1.9, pltl258.

> So all in all, guess that's why I am dog tired? This

> dog needs a bone to nibble on, time for dinner.

> Everyone have a good night, love, Bobby

>

> ps Eva, should we start a low ANC club? tee hee

>

>

> Eva <evaob365@...> wrote:

> Thankyou Dorothy , I am going to print these

> responses and take them to her. Take care; Eva

>

> From: Dorothy Emery

> Sent: Wednesday, June 18, 2008 4:24 PM

>

> Subject: Re: [ ] Fw: ANC ! ! !

>

> Hi Eva,

>

> I just want to let you know how Dr. Kantarjian of MD

> handled

> this situation with me many years ago when I started

> Gleevec. I too

> quickly became neutropenic with an anc of .9. I was

> on a trial so all

> my labs were being sent to MDACC. When they got the

> result of .9 they

> called me and told me I would need to stop the drug.

> I did that but

> just a couple days later I went to Houston for my

> checkup with Dr. K.

> My anc was still low. He told me that since I was in

> an extended

> Phase II trial I was not critical to the statistics

> and he said-- " go

> back on the drug and don't get a cbc for 6

> week--that way you won't

> have to go off the drug and you will do better in

> the long run. " He

> was sure my anc would recover and he was right. You

> can't make

> progress when you're not on treatment. I never took

> another break

> from Gleevec. I also didn't get sick even though at

> one point my anc

> did go to .6 and I was around a lot of sick people.

> It never goes

> that low anymore so this is usually a temporary

> thing and means you

> are responding well to Gleevec. I don't see how

> going on Sprycel

> would be a solution--I'm sure that drug would knock

> your anc just as

> low if not lower.

>

> I just felt I should let you know how one cml expert

> handled this

> situation. He felt it more important to get into

> remission than to

> keep the anc above 1. Maybe a doctor who has seen

> many many cml

> patients can be more comfortable breaking the rules.

>

> Best wishes,

> Dorothy

>

> On Jun 18, 2008, at 9:19 AM, Eva wrote:

>

> >

> >

> > From: Eva

> > Sent: Monday, June 16, 2008 10:42 PM

> > KTTWEETY@...

> > Subject: Re: ANC ! ! !

> >

> > Hi , I am 52 yrs old. My doc told me than my

> Neutrophils were 0.9 ,

> > told me to stop taking Gleevec and that I was to

> come back in one

> > week and if my levels weren't better than I would

> probably have to

> > go on Sprycel. I was alarmed. She was so matter of

> fact . My husband

> > was with me for the first time and he was mad ,

> there was no

> > discussing any other options she just kept on

> saying , " I don't think

> > so " We asked if I could just take half of my

> Gleevec and she said

> > No , I don't think so . I was doing really well. I

> wasn't have any

> > side effects anymore and I was starting to feel

> like myself again. I

> > was finally feeling relaxed and was not feeling

> like I was going to

> > die anymore. I go back this Wednesday we will see

> what she says.

> > Thanks for your input. Eva

> >

> > LKCS 2.8

> > HGB 123

> > HCT 0.355

> >

> > MCV 105.0

> > Neutrophils 0.9

> > Lymphocytes 1.5

> > Monocytes 0.3

> > Eosinophils 0.09

> > Basophils 0.01

> > LD 681

> >

> > From: IAintFinishedYet

> > Sent: Monday, June 16, 2008 5:32 PM

> > Eva

> > Subject: ANC ! ! !

> >

> > Hey Sister Survivor. . .

> > I don't know your age off-hand, however; I do know

> that I had very

> > low ANC counts after diagnosis. So low, that when

> my daughter took

> > me to a hospital in another county, my

> boy~~Doctor; wanting access

> > to the hospital; told me to be admitted or I would

> die if I didn't

> > let them admit me from the low ANC count.

> > The fact that it was over 40+ miles away; I left

> against medical

> > advise and went to my hospital. I ended up firing

> this doctor for

> > not giving my pain medication to me while he was

> oncall for 2 days.

> > Stating that my pain wasn't caused by my Cancer

> and he wasn't giving

> > me narcotics.

> > Back to the subject, I didn't have a 2nd or 3rd

> generation

> > medication to take then and I am now in my 5th

> year as a Survivor. I

> > know that middle-age survivors with other Chronic

> health issues,

> > like myself; aren't doing very well on Sprycel,

> etc. for longevity,

> > our gold~~Gleevec is the medication for us.

> Sprycel causes Pleural

> > Effusion, Heart issues, etc., It is for patients

> who fail or become

> > intolerant to our Gold. . .not as an either/or

> medication. Though

> > some Physicians are prescribing it initially.

> Please get all

> > information before you switch, because some

> Survivors haven't been

> > able to go back to Gleevec after being on

> Sprycel., and are having

> > Lung & Heart issues. I am not saying this to alarm

> you,

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